Kalydeco: Our Kids Struggle for access to wonder drug Kalydeco

My name is Angela Ryan, my husband is Darren Ryan. We have 3 children, one of whom is Chloe, she's 4 years old and she is our cystic fibrosis warrior. Chloe is a patient with cf and she has the gene type G551D. This means she is entitled to the wonder drug that is Kalydeco. 

Unfortunatly, the NCPE(National Centre of Pharmoeconomics) decided not to allow the drug for the 2-5 year old children at the recommended price agreed by Vertex and the HSE.

Our daughter Chloe is one of only 18 children in that age category in all of Ireland that are eligible. 

This petition is to graciously ask you all to sign in the name of the NCPE overturning this decision and giving our 18 children their God given right at a chance of a better quality of life.

please sign to show your support in helping us do this for our kids.

every signature is gratefully appreciated

if anyone would like to contact our parent group our e-mail is as follows:

kalydecoparentgroup@gmail.com

Your email address will not be published on our site. However, the author of the petition will see all the information you provide on this form.

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